Treating fetal alcohol syndrome

Emporia clinic hopes to diagnose, educate and prevent FAS

EMPORIA -- It is his first full day of summer vacation and Lance Sutton has to be coaxed to skip down the hallway of the Flint Hills Community Health Center.

Even the sight of his hosts for the day, staff members of the Fetal Alcohol Syndrome Clinic, skipping in unison isn't enough to inspire the 6-year-old.

The promise of peanut M&Ms didn't work either.

Nancy Devenport, a speech therapist with the FAS clinic says Lance isn't refusing to skip. And it isn't that he can't do it. Lance and other children who have been exposed to alcohol while in their mother's womb just don't think, move or behave like other children, she said.

"Their brains work differently, they function differently, they're wired differently. That's what we have to make everyone else understand," Devenport said.

One morning a month, the half-dozen team members of the FAS clinic try to make people understand the dangers of consuming alcohol while pregnant. A pilot program sponsored with $15,000 each from the state Legislature and the community, the clinic is the only one of its kind in the state. At its monthly meeting, the team takes one patient through several hours of testing, looking at the child's motor, memory and thinking skills, and conducting physical and psychological exams.

Clinicians look for four characteristics to diagnosis FAS: growth deficiencies, such facial features as small eyes placed far apart; brain dysfunction and known prenatal alcohol exposure. Children who don't meet all criteria are diagnosed with alcohol-related neurodevelopment disorders.

Once a child is diagnosed, all clinicians can do is offer suggestions to the child's guardians and school on how to cope with what one of the clinic's founders, Dr. James Barnett, calls an "invisible handicap."

About seven states have such clinics, said Barnett, a Republican state senator from Emporia.

Team members, including psychologists, physicians and therapists, traveled to the University of Washington in November 2001 to learn about FAS and how to operate a clinic. Their work time, about eight hours a month, is donated by their employers.

Lance, of Emporia, is the ninth patient to be seen at the clinic, and was referred by his school, said Elizabeth Sutton, his grandmother.

Children between the ages of 4 and 14 have come from all over the state and region to be tested since the clinic opened in August. Most children wait two or three months before being seen, and guardians and schools must submit piles of paperwork about the child.

Watching the clinic's physician, Dr. Jay Ciotti, test Lance's reflexes and balance, Barnett said the clinic's primary goal is to prevent the syndrome, which can lower IQs, impede growth, cause facial abnormalities and create behavioral problems. In some cases, fetuses can die.

The syndrome is entirely preventable with education, he said. The National Institute of Health reports 39 percent of women of childbearing age know about fetal alcohol syndrome.

"If you're pregnant, you shouldn't drink. And if you drink, you shouldn't be pregnant," he said.

The U.S. Public Health Service says there is no safe amount of alcohol a woman can consume while pregnant.

Each child affected by prenatal alcohol consumption costs about $1.5 million through his lifetime because of problems with school, criminal activity and employment, Barnett said. Patients at the clinic pay what they can.

"The clinic doesn't generate a lot of money. It has the potential to save lots of money," Barnett said.

One or two children per thousand live births are affected, but only one out of 10 children with FAS is properly diagnosed, he said. Many of the children no longer are with their birth parents, making it difficult to determine if alcohol was consumed.

Misunderstandings occur when parents and teachers confuse the syndrome's neurological and motor symptoms with the child having hyperactivity or behavioral problems, says Stacey Handly, the clinic's occupational therapist.

It isn't that the children don't want to behave themselves and work, it is that the kids don't know what is going on, so they find something else to do, Handly said.

Problems could be avoided if women simply abstained from alcohol while pregnant, clinic workers say. But the message can be confusing, said Beverly Long, family advocate for the team and an early childhood specialist at Emporia State University. When she was pregnant in 1983, her doctor recommended she drink wine, but Long decided not to. As a foster parent, she has experienced the difficulties of raising a child with FAS.

Long goes to bars, talking to patrons and posting signs about the dangers of expectant mothers consuming alcohol. At a restaurant once, she says she overheard a man that had been exposed to alcohol yelling at a pregnant woman at the bar, telling her that her child could turn out like him. He had several ex-wives, former employers and problems with the law.

Long walked over, greeted the man with a hug and took him back to her table, leaving the pregnant woman alone at the bar.

"I think she got the message," Long said.



Source:  The Topeka Capital-Journal